Innovative approaches to user involvement in social work and social care research

1. Innovative approaches to user involvement in social work and social care research Kathy Boxall Lorna Warren Daniel Heffernan Katie Nanasyova Louise Gold University of Sheffield

2. Innovative approaches to user involvement in social work and social care research • Introductions • What does access mean to you? • The story of the Researching Together course • Professor X and the slow shoppers • Video clips • Reflections on the Researching Together course one year on • Theoretical perspectives • Reading list

3. ACCESS Access isn’t just about ramps and buildings, it’s about communication too. What does access mean to you?

4. Researching Together

5. Reading • The Researching Together course had to be accessible to both long course and short course students; • We needed therefore to choose reading materials which were accessible to all; • Short course students did not have access to the university library.

6. Let me in – I’m a researcher!(Learning Difficulties Research Team and others 2006)

7. Let me in – I’m a researcher! • Let me in – I’m a researcher! was one of the 13 projects funded by the Department of Health from June 2003 to May 2005. • ‘We were paid to find out if people with learning difficulties were involved in the other 12 projects and to share the lessons of what makes good involvement work.’ • The research and the project management were done by people with learning difficulties.

8. Jargon words • ‘… we have sometimes used jargon words that researchers in universities know about. We have learnt what these words mean and, as researchers, we can use them when we’re talking with academics.’ • ‘There is a Glossary of jargon words on page 113.’

9. Epistemology • Epistemology is about ‘ways of knowing’; how we know and also who can know. • Some people argue that there is only one ‘true’ way of knowing. This way of knowing is called positivismor the scientific method. • Positivist researchers believe that it is possible to be objective, neutral and value free when designing and carrying out research.

10. Epistemologies • Feminist researchers and disabled researchers have challenged positivism and have argued that different people have different experiences and therefore know things from different perspectives. • If you have experienced giving birth to a child, you have a different kind of knowledge about childbirth than someone who has never given birth to a child. • Similarly, if you are a service user you may have a different kind of knowledge to people who have not had the same experiences as you – you may have a different way of knowing the world.

11. Why involve service users? • Sandra Harding says that dominant groups are ‘epistemologically disadvantaged’ when trying to research non-dominant groups and their experiences. • This is because members of non-dominant groups are aware of both their own understandings of their lives and situation as well as the dominant group(s) understandings. • They are therefore better placed, she argues, to generate critical questions from their standpoint.

12. The social model of disability • Disabled activists and academics (eg Michael Oliver) have proposed the social model of disability as an epistemological basis for disability research. • The social model of disability diverts attention away from ‘individual deficit’ towards external barriers.

13. Reading Boxall, K., Carson, I. and Docherty, D. (2004) Room at the academy? People with learning difficulties and higher education, Disability and Society, 19 (2): 99-112. Boxall, K., Warren, L. and Chau, R. (2007) User Involvement, in Susan M. Hodgson and Zoë Irving (Eds) Policy Reconsidered: Meanings, Politics and Practices, Bristol, The Policy Press. Branfield, F., Beresford, P. with contributions from others (2006) Making User Involvement Work: Supporting Service User Networking and Knowledge, York, Joseph Rowntree Foundation - available from: http://www.jrf.org.uk/knowledge/findings/socialcare/1966.asp Carr, S. (2004) Has Service User Participation made a Difference to Social Care Services?. London: Social Care Institute for Excellence, http://www.scie.org.uk/publications/positionpapers/pp03.pdf, the SCIE website, http://www.scie.org.uk also contains other useful documents. Hanley, B. (2005) Research as Empowerment? Report of a series of seminars organised by the Toronto Group, York, Joseph Rowntree Foundation, http://www.jrf.org.uk/bookshop/eBooks/1859353185.pdf Harding, S. (1993) Rethinking Standpoint Epistemology: ‘What Is Strong Objectivity’?, in Alcoff, L. and Potter, E. (Eds) Feminist Epistemologies, London, Routledge, pp49-82. Hubbard, G., Wilkinson, H., Petch, A. (2004) Research overview: users or losers: does the rhetoric of user involvement deliver?, Research, Policy and Planning, 22(1), pp53-6 – available from: http://www.ssrg.org.uk/publications/rpp/2004/issue1/researchoverview.pdf Oldman, C. (2002) ‘Later life and the social model of disability: a comfortable partnership?, Ageing and Society 22(6), 791-806. OPM (2007) Involvement for Real Equality: The benefits for public services of involving disabled people, London, Office for Public Management - available from: http://www.dotheduty.org/files/Involvementforrealequality.pdf Steel, R. (Ed) (2004) Involving the Public in NHS, Public Health, and Social Care Research: Briefing Notes for Researchers. Eastleigh: Involve, http://www.invo.org.uk/pdfs/Briefing%20Note%20Final.dat.pdf , the INVOLVE website http://www.invo.org.uk/ also contains many other useful documents Swain, J., French, S. Barnes, C. and Thomas, C. (Eds) (2004) Disabling Barriers – Enabling Environments, London, SAGE. The Learning Difficulties Research Team, Catherine Bewley and Linsay McCulloch (2006) Let Me In – I’m a Researcher! London, Department of Health – available from: http://195.33.102.76/assetRoot/04/13/29/79/04132979.pdf Turner, M. and Beresford, P. (2005) Contributing on Equal Terms: Service user involvement and the benefits system, London, Social Care Institute for Excellence, http://www.scie.org.uk/publications/reports/report08.pdf Turner, M. and Beresford, P. (2005) User Controlled Research: Its meanings and potential, Shaping Our Lives and the Centre for Citizen Participation, Brunel University, http://www.shapingourlives.org.uk/Downloads/Usercontrolledresearch%20report.pdf, the Shaping Our Lives website, http://www.shapingourlives.org.uk also contains other useful documents. Warren, L. (2007) Carers Having a Say. Sheffield: Department of Sociological Studies, University of Sheffield and Princess Royal Trust Sheffield Carers Centre – available at: http://www.sheffieldcarers.org.uk/site/index.php?page=publications